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Committee to address transplant data collection and use

Fourteen clinicians and professionals involved in organ donation, organ transplantation and data management have been named to a newly formed Organ Procurement and Transplantation Network (OPTN) committee. The Data Advisory Committee (DAC) will assess what data should be collected on organ donation and transplantation in the United States, as well as how the data should be collected and made publicly available.

The OPTN collects a wide array of clinical and demographic data on organ donors, transplant candidates and transplant recipients. This information is used in many ways. Researchers from the OPTN and the Scientific Registry of Transplant Recipients (SRTR) commonly use the data to evaluate outcomes of OPTN policies, estimate the impact of proposed policies, and assess performance of OPTN member institutions. The data are also used for many other purposes such as research studies, news articles, helping potential transplant candidates assess treatment options, and fostering public awareness of the need for organ donation.

“Many people have many different interests in OPTN data. We must balance the need for robust and timely data with the capability of transplant organizations to submit it to the OPTN,” said Charles Alexander, chair of the committee. “In addition, there have been major recent changes in how healthcare institutions collect and manage data, especially the evolving use of electronic medical record systems. Our committee will work to ensure that the OPTN data system is innovative, accurate and responsive to many needs.”

The DAC will develop recommendations for consideration by the OPTN Board of Directors on issues including specific data fields to be collected, methods of collection, and use of data for purposes such as quality improvement and public interest.

The DAC includes representatives recommended by both the OPTN and SRTR and will be advised by staff members from both entities. Committee members represent a number of areas of expertise, including clinicians and administrators involved in organ donation and transplantation, researchers specializing in medicine and public health, and experts in data collection and analysis. Individual members are as follows:

Charles Alexander, RN, M.S.N., M.B.A. (chair), chief executive officer of The Living Legacy Foundation of MarylandJoseph Kim, M.D., FRCPC (vice chair), nephrologist at Toronto General HospitalYael Coppleson, project manager at New York-Presbyterian HospitalSandy Feng, M.D., Ph.D., associate professor of surgery at UC San Francisco Medical CenterAlexandra Glazier, J.D., M.P.H., vice president and general counsel at New England Organ BankRichard Hasz, Jr., M.F.S., vice president of clinical services at Gift of Life Donor ProgramIan Jamieson, M.B.A., M.H.A., vice president of transplant services at Duke University Medical CenterMaryl Johnson, M.D., professor of medicine, heart failure and heart transplantation at University of Wisconsin School of MedicineAlan Leichtman, M.D., medical director of pancreas transplantation at University of Michigan Medical CenterRobert Merion, M.D., professor of surgery at University of Michigan Medical CenterMike Peterson, Ph.D., vice president of platforms and data architecture at NeuStar, Inc.Jesse Schold, Ph.D., M.Stat., M.Ed., project staff member at Cleveland Clinic FoundationStuart Sweet, M.D., Ph.D., medical director of pediatric lung transplantation at St. Louis Children’s HospitalJames Wynn, M.D., professor of surgery at University of Mississippi Medical Center

Staff of the U.S. Department of Health and Human Services, Health Resources and Services Administration, Division of Transplantation, also serve as ex officio, nonvoting members of the committee.

United Network for Organ Sharing (UNOS) serves as the Organ Procurement and Transplantation Network (OPTN) by contract with the U.S. Department of Health and Human Services, Health Resources and Services Administration, Division of Transplantation. The OPTN brings together medical professionals, transplant recipients and donor families to develop organ transplantation policy.